Health Data Sharing Attitudes Towards Primary and Secondary Use of Data: A Systematic Review

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BACKGROUND: To receive the best care, people share their health data (HD) with their health practitioners (known as sharing HD for primary purposes). However, during the past two decades, sharing for other (i.e., secondary) purposes has become of great importance in numerous fields, including public health, personalized medicine, research, and development. We aimed to conduct the first comprehensive overview of all studies that investigated people's HD sharing attitudes-along with associated barriers/motivators and significant influencing factors-for all data types and across both primary and secondary uses.

METHODS: We searched PubMed, MEDLINE, PsycINFO, Web of Science, EMBASE, and CINAHL for relevant studies published in English between database inception and February 28, 2023, using a predefined set of keywords. Studies were included, regardless of their design, if they reported outcomes related to attitudes towards sharing HD. We extracted key data from the included studies, including the type of HD involved and findings related to: HD sharing attitudes (either in general or depending on type of data/user); barriers/motivators/benefits/concerns of the study participants; and sociodemographic and other variables that could impact HD sharing behaviour. The qualitative synthesis was conducted by dividing the studies according to the data type (resulting in five subgroups) as well as the purpose the data sharing was focused on (primary, secondary or both). The Newcastle-Ottawa Scale (NOS) was used to assess the quality of non-randomised studies. This work was registered with PROSPERO, CRD42023413822.

FINDINGS: Of 2109 studies identified through our search, 116 were included in the qualitative synthesis, yielding a total of 228,501 participants and various types of HD represented: person-generated HD (n = 17 studies and 10,771 participants), personal HD in general (n = 69 studies and 117,054 participants), Biobank data (n = 7 studies and 27,073 participants), genomic data (n = 13 studies and 54,716 participants), and miscellaneous data (n = 10 studies and 18,887 participants). The majority of studies had a moderate level of quality (83 [71.6%] of 116 studies), but varying levels of quality were observed across the included studies. Overall, studies suggest that sharing intentions for primary purposes were observed to be high regardless of data type, and it was higher than sharing intentions for secondary purposes. Sharing for secondary purposes yielded variable findings, where both the highest and the lowest intention rates were observed in the case of studies that explored sharing biobank data (98% and 10%, respectively). Several influencing factors on sharing intentions were identified, such as the type of data recipient, data, consent. Further, concerns related to data sharing that were found to be mutual for all data types included privacy, security, and data access/control, while the perceived benefits included those related to improvements in healthcare. Findings regarding attitudes towards sharing varied significantly across sociodemographic factors and depended on data type and type of use. In most cases, these findings were derived from single studies and therefore warrant confirmations from additional studies.

INTERPRETATION: Sharing health data is a complex issue that is influenced by various factors (the type of health data, the intended use, the data recipient, among others) and these insights could be used to overcome barriers, address people's concerns, and focus on spreading awareness about the data sharing process and benefits.